My daughter has a disability. I don’t want Jesus to ‘fix’ her.

My daughter has a disability. I don’t want Jesus to ‘fix’ her.

The author, Heather Kirn Lanier, and her daughter

I am a skeptic who goes to church on Sundays. Over the past year, I started reading chunks of the Bible every day, and I was surprised by the man I met. I did not encounter the Jesus of my Baptist upbringing, that shampoo-commercial brunette who smiled beside children and lambs. I encountered a Jesus who pushes against the rules of religious and cultural authority. He says, I know your laws. I’m healing on the Sabbath. He says, Scratch your tribal divides, I’m drinking water with a Samaritan woman.

But on the subject of disability, I found a Jesus that is, frankly, disappointing. He usually does precisely what disability advocates rail against. He reinforces the idea that the disabled body is broken, damaged. He treats the disabled body as something to fix.

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“Take up your mat,” he tells people who could not walk, and suddenly, they walk. He spits into his hand, touches a deaf man and the man can hear. The sick and lame touch the “fringes of Jesus’ cloak,” and, like that, they are “fixed,” transformed into the likenesses of their able-bodied brethren.

“I’ve got a bone to pick with Jesus,” I said to my husband, an Episcopal priest. “Why does his primary miracle have to be un-disabling the disabled?”

My husband conceded the problem, noting that Jesus often operated within the constructs of his time.

Not damaged goods

Five years ago, my husband and I had just begun life as parents when we discovered our baby had an ultra-rare syndrome. One night, as she was sleeping upstairs, we talked at our dining room table. I hedged around the unsayable for a few minutes and then went straight for it: “What will she do when she gets older? Bag groceries?”

I said this as though working as a grocery bagger were a tragedy. I would not have said this to any other person because I knew that such statements were snobby and ableist and disparaging of grocery baggers. But my kid had just been diagnosed with a chromosomal condition that in most cases led to intellectual disabilities. And so, it turned out I was snobby and ableist and disparaging of grocery baggers. I had to admit this aloud so I could excise it from myself.

My kid had just been diagnosed with a chromosomal condition that in most cases led to intellectual disabilities. And it turned out I was snobby and ableist and disparaging of grocery baggers.

My husband’s reply was a plain sentence of ferocity and kindness. “She’s not damaged goods,” he said. In four words, he named the prevailing attitude toward people with intellectual disabilities—that they are broken—and he kicked that attitude out the front door of our home.

“Of course she’s not,” I said quickly. But inside I heard another response. She’s not? It was a real question. And in reply to thisquestion, two voices emerged inside me.

One voice said: Yes, of course, she’s damaged. She’s missing a chunk of a chromosome. It broke off during meiosis and it makes her small and epileptic and delayed. If you could fix every one of her cells, if you could find that small tip of her fourth chromosome and put it back, you would.

But just as this answer formed, a second one arose. It said simply: No. She’s not “damaged goods.” She’s good and she’s whole and she’s holy. This second voice did not mean that my daughter was “special” or “angelic” or any of the other tropes of disability. It just meant she was good and whole and holy simply because she was human.

That was five years ago. Since then, the second voice has only gotten louder and clearer. I hear it when I watch my 21-pound 5-year-old strut across the living room, swinging her left arm in an exaggerated saunter. I hear it when my daughter squeals with delight because life contains cheese and hats and Elmo. I hear it when my girl snuggles against my chest before bedtime. “I love you,” I say, and her sapphire eyes look up at me, and she says with a long whisper, “Yeaaah.”

She’s good and she’s whole and she’s holy. This voice is as weighty as the seismic hum of the planet.

She’s good and she’s whole and she’s holy. This voice is as weighty as the seismic hum of the planet.

Yet since my daughter’s diagnosis, I have heard that first voice in the cultural buzz all around me. The voice that says my daughter is flawed, imperfect, in need of fixing. I hear it when people describe a newborn baby’s features as “birth defects.” I observe it when looking at the way terms for “intellectually disabled” eventually become insults. Moron. Retard. Mentally challenged. Soon, maybe, special needs.

I hear that voice when internet comments assert that people with any kind of disability shouldn’t have children, or shouldn’t take up valuable resources or shouldn’t be alive. I hear that “damaged goods” voice when the Princeton ethicist Peter Singer argues that babies with disabilities can ethically be killed.

I hear that obnoxious buzz when a candidate for the country’s highest office bends his wrist, throws his hand against his chest, shakes his body around and slurs his words. “You should see this guy,” he says of a reporter with physical disabilities. “You should see this guy.”

And I hear that voice, loud and clear, when that candidate is voted into office.

The disabled body is less than. This is the cultural message.

Whole and holy

But one place I did not expect to find this message is in the words of the man that two billion people on the planet worship. For months, I held a grudge against Jesus, deciding that the Son of Man was a horrible disability advocate. Eventually, though, I learned that the Gospel of Luke, which contains many of Jesus’ healings, was most likely written by a doctor.

“Back then,” my priest-husband said, “people didn’t make the same distinction between the body and the soul like many do today. In the mind of Luke, the body and the soul are one unit. So whenever there’s a healing going on, the spirit is also healed. That was part of the worldview.”

My husband was saying that, in order for the Gospel writer to convince his audience about a healed soul, there had to be a healed body.

Two thousand years later, we still see the residue of this flawed body-soul logic in our culture. People with visible disabilities often describe being accosted by religious strangers. On the blog Planet of the Blind, Stephen Kuusisto writes: “It’s peculiar when I meet a stranger who finds herself or himself driven by who knows what compulsion to say: ‘Can I pray for you?’ This happens more often than one may think.”

Jesus seems sick of it, the incessant demand to heal. The healings, I think he is saying, are not the point.

On the blog Bad Cripple, Bill Peace writes: “Many people have prayed for my poor crippled soul.... I have been told repeatedly that I am paying for grievous sins my parents committed. My miserable existence is God's punishment to hurt my parents. Little old ladies sitting in wheelchairs come up to me in church and tell me they are praying for me and that I should not worry: ‘God will cure you. You will walk again.’”

My daughter attends church every Sunday, and, thankfully, no one tries to heal her. But I still seek a more promising disability theology. And as I continue reading the Bible, I notice something about Jesus’ many healings. He seems hesitant to do them, annoyed even.

When a father asks him to cure his child’s epilepsy, Jesus says, “How long must I put up with you?” After putting his fingers into a deaf man’s ears and touching the man’s tongue with spit, he sighs to the heavens as if to say enough of this. Even though theologians will tell you it is a calling down of the spirit, I read it as frustration. He seems sick of it, the incessant demand to heal. The healings, I think he is saying, are not the point.

In The Disabled God, Nancy L. Eiesland notes that Jesus’ body is not perfect after he is resurrected. According to the written accounts, Jesus is not some ethereal figure of light, some divine translucence after his resurrection. He is flesh. He is bones. And he has wounds. He has the slash on his side, the holes in his hands. From the ordeal of his crucifixion, Ms. Eiesland argues, his body has been in some small way disabled.

Disability is part of our wholeness.

She argues that, to boot, when Jesus returns to his friends, he upends the belief that disability is taboo. He says, “Peace be with you,” and then, “Stick your fingers in my side.” He encourages them to touch his wounds.

“In so doing,” Ms. Eiesland argues, “this disabled God is also the revealer of a new humanity. The disabled God is...the revelation of true personhood, underscoring the reality that full personhood is fully compatible with the experience of disability.”

Whether or not you believe the seemingly absurd story that a divine reality decided to meet humanity on foot, walk among people, die and then walk again—the heart of Ms. Eiesland’s argument is compelling: Disability is part of our wholeness.

Call me faithless, but the tip of my daughter’s chromosome will never appear in every one of her cells. But I do not want anyone to “fix” my kid. That is not the miracle I seek.

Instead, I want someone to lay hands on the people who presume she is less than. I want someone to eradicate the idea that bodies are either productive or burdensome, that they either contribute to the gross domestic product or drain it. I want someone to lay hands on the president for doing what an apologist later called “the classic retard.” I want some mystical savior to eradicate the assumption that disability is a curse, a calamity.

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joseph mulligan

10 months 3 weeks ago

JESUS ASKED PEOPLE WITH DISABILITIES WHAT THEY WANTED

I have ministered to (and been a friend of) many people with disabilities in Nicaragua for 31 years.

I agree with many points made by Heather Kirn Lanier in “My daughter has a disability. I don’t want Jesus to fix her” (March 7, 2017). The writer’s unconditional love for her daughter, just as she is, is a great inspiration; and her delight in her daughter’s love for her is precious.

I feel strongly that we must join in solidarity with folks with disabilities in their bold struggles for the full recognition (in law and in practice) of their basic human rights. And we must cherish them and be friends and loving relatives to them as we would to all people and receive love from them – as in all good human relationships.

Ms. Lanier is disappointed because Jesus “usually does precisely what disability advocates rail against. He reinforces the idea that the disabled body is broken, damaged. He treats the disabled body as something to fix.”

But people with disabilities, in my experience, do want to be helped by modern technology and medical science if such help becomes available; and that is what their family and friends want for them, too.

The blind Bartimaeus, taking the initiative, shouted out to Jesus for mercy. Then Jesus had the sensitivity and respect to ask: “What do you want me to do for you?” No hesitation: “Let me see again.”
Jesus: “Go; your faith has made you well” (Mark 10:46-52). The Peruvian theologian, Gustavo Gutierrez, on receiving the Pacem in Terris Peace and Freedom Award (Davenport, Iowa -- 28 September 2016), noted: “Jesus does not simply heal the person; but he wants to listen to him, expressing respect for him by asking what do you want me to do for you. The man participates in the process. His dignity and equality are maintained.
“Your faith has saved you, not my power. Jesus affirms the man and his faith. We too must respect and affirm people we help and learn to listen.”
When Jesus healed the hemorrhaging woman, he said: “Daughter, your faith has made you well; go in peace” (Luke 8:48).

When Jesus saw a paralyzed man at a pool in Jerusalem, he asked, before healing the man: “Do you want to be made well? (John 5:6). In other passages Jesus does not ask that question but the person to be healed indicates clearly what is desired. “All in the crowd were trying to touch him” (Luke 6:19) to be healed.
In some cases, friends or relatives express the person’s wish (Luke 7:3; 8:44a).

The writer feels that Jesus “seems sick of it, the incessant demand to heal. The healings, I think he is saying, are not the point.” I don’t think Jesus ever got sick of healing the sick: that was his most frequent way of showing his boundless compassion in deeds.

True, the point of many of the healings is that he did them on the Sabbath, as Ms. Lanier notes. And they were not the whole point, since Jesus wanted people to pay attention to what he was doing the other major part of his working time: preaching, teaching, proclaiming the Kingdom of God.

Jesus does not have to be disappointing, but rather an example and ally in our relationships with folks with disabilities. Ms. Lanier has a profound sense that her daughter is “good and whole and holy simply because she is human”; surely that would not prevent Ms. Lanier from welcoming medical and technological assistance for her daughter whenever some breakthroughs occur, giving Jesus some new tools.

Sincerely,

Joseph E. Mulligan, S.J. (Chicago-Detroit Province)
Nicaragua

Carolann Cirbee

10 months 3 weeks ago

Many years ago, Lloyd Douglas addressed this topic in his book 'The Robe'. Marcus, a Roman tribune, meets Miriam of Cana, a paralyzed woman with whom Jesus visited on his way to a wedding. Jesus did not cure her paralysis of body, but instead cured her paralysis of spirit. Miriam tells Marcus she prefers this, because she can show people what it means to live a joy-filled life, even when others are puzzled by her happiness.

Bruce Snowden

10 months 3 weeks ago

Mrs. Lanier, Respectfully, in the Gospel Jesus identifies Himself to a mother hen looking after her chicks, sheltering them under her wing and in so doing Jesus, God, had no hesitancy equating the female form, Motherhood, to God Who He is. Like Jesus as Mother, you have taken your daughter, your “chick” under your protective wing, mothering her, sheltering her, from all manner of human insensitivity and as a parent, I understand where you’re coming from.. Within that frame I’m wondering if I may say your daughter’s chromosomal quantity just enough for her, makes her perfectly imperfect? Or is it imperfectly perfect? Is that offensive to you? I hope not.

Nobody as you know, is perfectly perfect, everyone needs some “fixing.” Isn’t that one reason why Jesus said, “Ask and you shall receive?” Your daughter may need fixing by Jesus, or maybe she doesn’t as your maternal insight suggests, but far greater is the “fixing” humanity at large needs, so as to recognize the irreversible dignity that the perfectly imperfect people like you daughter have deserving of recognition, not complaint. This is no less than a moral imperative as impressively shown by Pope Francis in his loving embrace of perfectly imperfect humanity. And as you are doing.

If you believe with all the love and wisdom of a mother’s heart, a parent’s heart, that Jesus is telling you not to be concerned about him “fixing” your daughter, but to be content with the situation at hand, becoming for most of us a teaching moment, then by all means let it be! Your love itself is healing for your daughter and for all who care to accept God’s loving embrace bestowed by you.

I personally would prefer to be “fixed” broken as I am especially at Eighty-five years old. But I’d rather be touched by love and love is very accepting, not irresolute. Your resolve reminds me of Ignatius’s prayer of assurance, “Give me Your Love and Your Grace (from people like you!) and that will be enough for me.” Unfathomable love, Amazing Grace!

Lisa Weber

10 months 2 weeks ago

I grew up with a disabled brother and I am now his guardian. I cannot imagine saying that I would not want Jesus to heal his disability - not for my sake, but for his. People are more than their disabilities and the world often does not recognize that. The lack of insight is an illness that we could heal with human means.

Henry George

10 months 2 weeks ago

If your daughter asked to be healed, would you oppose her wish ?

Margi Sirovatka

10 months ago

I tried to be understanding of the author's sentiments...until she disparaged one political candidate/turned president and did not, in a balanced manner, disparage the alternative political candidate in consideration of the article's topic. Mr. Trump should be called to task for his actions and words as quoted by Ms. Kirn Lanier. Yet, in order to demonstrate the Christian holistic perspective, we should consider the whole political story. Here is a quote from Ms. Clinton:
"I have met with women who toward the end of their pregnancy get the worst news one could get: that their health is in jeopardy if they continue to carry to term or that something terrible has just been discovered about the pregnancy." So just what is "terrible"? Here we get into the crux of the issue...what is "good", what is "whole" and what is "holy"?
Ms. Kirn Lanier's angry edginess can be a gift that is used to create positive change but it can be also be a double-edged sword when channeled poorly.

Shawna Mathieu

9 months 3 weeks ago

The author misquotes the Bible several times, takes verses out of context, and leaves out verses in a scene in order to make Jesus agree with what she says. As a disabled person, I really don't care for her saying ALL disabled people don't want to be cured. I don't care for her projecting her opinion onto the Gospels when it's not there. The disabilities the people Christ healed caused considerable suffering, kept them from being part of society in any form, were untreatable, and, in several cases, would shorten their lives or kill them. They wanted to be healed. Jesus asked them what they wanted, and all of them explicitly told Jesus they wanted to be healed. I'm sorry to hear her daughter has a major disability. I'm glad she accepts her daughter for who she is. I'm sorry that the Scriptures don't agree with her rather romanticized ideas on disability, but that does not give her the right to twist them around to suit her purposes.

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This article also appeared in print, under the headline "My daughter has a disability. I don’t want Jesus to ‘fix’ her. ," in the May 15, 2017 issue.

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